BMC Medical Ethics 22 (1):1-8 (2021)

Authors
Bert Heinrichs
Universität Bonn
Abstract
BackgroundAdvance research directives have been suggested as a means by which to facilitate research with incapacitated subjects, in particular in the context of dementia research. However, established disclosure requirements for study participation raise an ethical problem for the application of ARDs: While regular consent procedures call for detailed information on a specific study, ARDs can typically only include generic information. The introduction of ARDs could thus establish a double standard in the sense that within the context of ARDs, type disclosure would be considered sufficient, while beyond this context, token disclosure would remain necessary.Main bodyThis paper provides an ethical analysis of ARDs, taking into account the results of numerous empirical studies that have been performed so far. It will be argued that a revised understanding of informed consent can allow for context-sensitive disclosure standards. As a consequence, ARDs that include type disclosure can be acceptable under suitable circumstances. Such an approach raises a number of objections. A thorough examination shows, however, that they are not sufficient to justify a rejection of the approach.ConclusionThe approach presented in this paper avoids introducing a double standard. It is, therefore, more suitable for the implementation of ARDs than established approaches.
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DOI 10.1186/s12910-021-00704-5
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References found in this work BETA

Foundations of Illocutionary Logic.John Rogers Searle & Daniel Vanderveken - 1985 - Cambridge, England: Cambridge University Press.
Advance Consent, Critical Interests and Dementia Research.Tom Buller - 2015 - Journal of Medical Ethics 41 (8):701-707.

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